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Idaho2790

Distinguished member
Joined
Dec 22, 2017
Messages
146
Reason
PALS
Diagnosis
01/2018
Country
US
State
Idaho
I was originally diagnosed with progressive bulbar palsy in January of 2018. At that time we were told that there was an excellent possibility of having several years before things really became troublesome. In April 2018 I had a PEG put in and speaking was no longer a possibility. My legs have been spastic at night and my right leg has a drop foot. These things we have been able to work around and, although not the ideal life we had, they were tolerable.

Five days ago my husband called 911 for an ambulance. I couldn't walk for pain and was vomiting. Jevity has never been a past issue. I was just released this afternoon. My vision is poor, my stability even with a walker isn't good and both hands are losing control of a pen to write.

When first diagnosed, PBP on the net indicated that this was a fast progressive type of ALS. Is that the feeling from others who have Bulbar onset?
 
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